Nobody is willing to wrap their tongue around anything that requires 11 syllables. But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. He wasn’t verbally lazy. He was nefarious.

…To understand why the department of Health and Human Services (HHS) decided to bury this illness with a silly name, we have to go back to 1934, to the Los Angeles County Hospital. In that year, a polio epidemic was raging through California, claiming hundreds of lives. In 1934, 198 staff members at the LA County Hospital were struck. But they did not develop paralysis, nor did they die. They suffered from a range of symptoms that included weakness, easy fatigability, exercise intolerance, and photophobia, all of which suggested a neurological disease – like polio. But their symptoms did not resolve over time.

It was not polio. The physician who reported this mysterious epidemic, Dr. Alexander Gilliam, called it “atypical polio.” Eventually, two of the doctors who had fallen ill sued. They each won two million dollars – an enormous amount of money in those days.

As the epidemic of “atypical polio” spread around the Northern Hemisphere, increasing numbers of people were struck. In 1955, there was an epidemic in Royal Free Hospital in London. Like the LA epidemic, there was a high attack rate among hospital personnel. The investigating physician, Dr. Melvin Ramsay, called it “myalgic encephalomyelitis,” meaning pain accompanied by inflammation in the brain and spinal column. He noted that the symptoms of ME exactly replicated those of the LA County Hospital outbreak.

Since then, there have been over 60 outbreaks of ME, but the one that drew media attention in the US was the Incline Village outbreak in 1984. Two doctors, Dr. Dan Peterson and Dr. Paul Cheney, began seeing patients with a peculiar illness. The illness caused easy fatigability, weakness, pain, sleep disorder, and a spate of neurological symptoms. It got worse with exercise. Over that summer, hundreds of people were struck. The doctors were sure that it was an epidemic, and that it was caused by a pathogen affecting the central nervous system. They called the CDC.

The CDC showed up eventually, but they refused to examine any of the patients. Steven Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “yuppie flu.”

Once it was sufficiently discredited, “CFS” could be safely shoved under the rug for three decades.

Since the 1984 Incline Village outbreak, over one million people in the US have contracted the disease. Between 17 and 20 million people have ME worldwide. The economic losses are staggering – $17-23 billion dollars annually in the US alone.

But over most of the past 30 years NIH has spent nothing on research for the disease. This year it reserved $5 million, or less than $5 per person. In contrast, the NIH is spending more than $2.7 billion on AIDS, which has a comparable prevalence.

This paucity of expenditure has slowed serious scientific research. In addition, because there is no money for research, researchers and clinicians at academic institutions are discouraged from studying the disease. Doctors in major hospitals are told not to treat it, because insurance companies won’t pay for an illness that has “no cause and no cure.” And peer-reviewed journals will not publish research papers on the illness.

In short, the illness has been blacklisted. And the reason is not simply because HHS is incompetent, or because it feared yet another AIDS-like epidemic – although those things influenced its decision to do nothing. The reason HHS has spent thirty years in denial stems from those two doctors who received $4 million after the 1934 LA County outbreak. From that point on, this illness has been on the radar of insurance companies.

It would be a mistake to think that HHS operates without input from the insurance industry. And it would be a mistake to believe that the insurance industry – which has spent 30 years refusing to cover patients with the illness, and has hired physicians to dismiss the disease as “all in your head” – is not panicked by Obamacare. With over a million sick with ME, and a quarter of those unable to get out of bed, they stand to lose billions.

*****

Breakable – a self portrait

Yes, a bureaucratic trick of the insurance industry changed our name and helped keep the world ignorant to our illness. This makes me so angry I could cry. The sheer cruelty of it is astonishing, even for insurance companies. Intentionally denying care, intentionally denying the existence of the disease at all; it’s unforgivable. But we sick will NOT be forgotten.

The vast majority of the world has never even heard of ME, let alone experienced it, on their own or through others. That ignorance is absolutely deadly to us all. If the public does not demand, loudly, persistently, that change MUST happen, it never will. And that cannot be allowed. The stakes are far too high.

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be. Your print will come on beautiful, shimmering, pearlized, archival paper. And all you have to do is tweet!

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Tweeting multiple statements will count as extra entries, so enter as many times as you like. However, tweeting the same statement multiple times will not count. And that will probably just annoy the people reading your feed, so don’t do it. 😉 I will choose a random winner from all entries on May 20th and announce the winner here!

Thank you to everyone for reading and participating! If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

[…] interviews, articles, videos and blog entries. During ME Awareness week, I wrote a blog entry for each day of the week and held a print giveaway for those who helped spread awareness about it. The Microbe Discovery […]

[…] extensively as it’s been an enormous part of my life for the last eight years. How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion. […]